My Forum Comments
Absolutely not alone and my heart goes out to you, sweetie!! I have an 8-year-old (weeks from being 9) son, who I struggle to feel like a good mother to every single day. I don’t have any answers, but I will share the bits I’ve gleaned over the years since his diagnosis at 5 years old. One moment of digression though: it absolutely astounds me that there are so many struggling mamas (and sometimes dads) out there and so very often we come in absolutely clueless about this thing called ADHD (not to mention comorbid and look-alike diagnoses) and yet we almost all go on this learning curve alone for so very long. It makes no sense to me.
Moving on…a little about my son and our story. He’s diagnosed with ADHD and he has tested as gifted, which proves frustrating for him. He has done much of what you talk about. The issues with guns being fascinating and suspension from school resonates quite a lot. In second grade (he just finished 3rd), he was in trouble a lot for shooting with his finger and saying (sometimes doing) violent things, like threatening students. He wouldn’t have really hurt them; he was trying to deal with big emotions that he didn’t understand. But the school didn’t know that and I didn’t really know that either at the time. He’s been suspended numerous times and there was even talk about an alternative school for a while.
I recognize now that I was waiting for someone to come in and point me to the ADHD answer and magically my kid would be fixed, because I followed all the directions. I think I felt embarrassed and angry. I don’t think I really comprehended that it wasn’t defiance.
Then 3rd grade happened. He started the year entirely differently. He wowed everyone with his much-improved behavior. I’d like to take credit for this, because we did work hard over the summer to improve his behavior (brain-training and screen-free summer were the biggest things, I think); however, in the end, I think the most effective thing was changing his meds from Intuniv to Ritalin. BUT another big thing was that I subscribed to ADDitude magazine right after 2nd grade was over and had the whole summer to read, read, read. I ran into an article about writing a PARENT’S CONCERNS LETTER. I wrote one (several times) and rewrote it (several times) and by the end of the summer, I’d pared it down to about a page and a half. I was very surprised how rapidly I was responded to. The boss of the Special Ed teacher contacted me and scheduled an IEP review and he ran the meeting himself. (He had to come from out-of-town to do that.) I received everything I asked for in the letter! Some things, in the end, were still not satisfactory, but the real learning for me was about my perspective. I wanted the school to know how to “fix” my son. I sure didn’t know and the school surely must know because they worked with so many kids. They did open the door to the world of IEP for me and the Parent’s Concerns letter helped me know how to speak up for my son. And no matter what anyone in the IEP meeting says, YOU are the only real person looking out for your child’s best interest. It doesn’t make the school full of demons, but it is a reality that the school is simply following a law (IDEA: Individuals with Disabilities Edcuation Act of 1990) and they are not working with your child out of the goodness of their hearts. The Parent’s Concerns letter gave me the avenue to give voice to legitimate wrongs the school was doing to my son, such as taking away recesses for behaviors he couldn’t control without help.
Also through ADDitude, I learned about EDUCATIONAL ADVOCATES. It took a lot of phone calls and quite a few dead ends, but I finally lit upon an organization that could help me. Now, I wanted an educational advocate to attend my son’s IEP meetings with me, which is what ADDitude said an EA was. That turns out not to be true in Kansas; EA’s are court-appointed for kids in foster care (usually) and need a voice to represent them in their IEP meetings. Nonetheless, the woman I spoke with gave me 2 key bits of info: 1) they do training for (usually) foster parents to become EAs and I was welcome to come to one they were having in a few days, and 2) EVERY STATE has an organization like this one, because the IDEA law requires each state to have a parent info center. This means your state has something! If you can’t figure out how to reach a similar organization in your state, google Families Together, which is what the organization is called in Kansas, and I feel certain they will help you get to the right people in your state. I felt very empowered after going to the training they offered. It was focused on the IDEA LAW and what my child’s rights were and what my rights were as a parent advocating for my child. I felt much, much more empowered when I went to his initial 3rd grade IEP meeting. Most important, it took me off the path of being a victim (somebody show me…) and put me on the path of knowing how to be an advocate for my son. The road at school is not all roses now, but it is better and I’m taken seriously. It would be even better if I followed up with the school more frequently and that’s on me. This is definitely a situation where the squeaky (but polite and not defensive) wheel gets the attention.
-I recently read (probably on this site somewhere) that far and away the most effective treatment plan for ADHD is stimulant medication coupled with behavioral therapy, especially GROUP THERAPY. I’d never read that before (the group part), but it makes sense to me. I’m here talking about dealing with ADHD; where does my son talk about it? With another adult (in 1 on 1 therapy) who is trying to help him to change. Is there any place where he can let down his guard? I don’t think so. So GROUP therapy with other ADHD kids makes sense to me. I got a recommendation from his occupational therapist and I’m calling this week to find out how to get started. My fingers are crossed and my hopes are high.
-There is also something called Parent Child Interaction Training (PICT), which we haven’t done, but could use. (I haven’t found it easy to find where we are.) My interpretation of it is that the therapy takes you steps past the usual therapy advice of being consistent, for example, and teaches you how to do that without freaking out when your child reacts to you trying to change the status quo. Reminds us that it’s totally okay and appropriate to say, “I’m the parent and I say what happens around here.”
-We had a breakthrough understanding with my son’s occupational therapist. (Out of desperation, I got a referral for an OT to see about sensory issues. I will admit to being skeptical, but pleasantly surprised to find helpful things come out of these appointments). The school complained that he consistently had trouble with hyperactivity and impulsiveness going from PE to music, which happen very near the end of the school day. The OT had him do a simple obstacle course she set up in the hallway, 5 times. The course forced him to change speeds and elevation, which meant he had to engage his brain to do the course well. His first time through, he was clearly hyped up and by the fifth time through, he’d slowed down considerably and was calm enough to balance himself on the yoga ball (the final move). He was like a different kid in a matter of 5 minutes and I was amazed. The OT also showed me a video that a school in France posted. They put a tape-based obstacle course in the school hallway and kids can use it as needed. Look up Audrey LaFleur on Facebook for the post. Wisely, the OT pointed out that just as my son starts his day with Bal-A-Vis-X (a sensory exercise program) and it helps him tremendously to settle into his mornings at school, he needs another ‘sensory dose’ between PE and music just as if he needed another dose of medicine. You can bet I will be including this in my parent’s concerns letter for 4th grade!
-Another big moment for me was adjusting MY meds! I was taking 50mg of Zoloft for seasonal affective disorder. I increased it to 100mg and then to 200mg after an especially ugly incident with my son. It took me a while to be consistent with the increased dose and in watching my own behavior, I eventually realized the increased dose was helping me tremendously to stay calmer and avoid engaging in power struggles.
-Magnesium supplement. I’m still finding the right thing for my son (supplement, bath flakes, roll on feet, etc), but I’m sold on the idea of increasing the magnesium. It helps relax muscles. As much as 70% of the country’s population is deficient because our bodies don’t manufacture magnesium so we have to get it from foods we eat.
-A couple of things I learned from a positive parent group are 1) Mind, Body, Soul Time (MBST) and 2) let him save face. In full disclosure, I struggled with this group a lot, but I did come away with these two important and useful ideas. MBST is 15-20 minutes of time you dedicate to each of your children every day. The kids choose the activity and you avoid criticizing or discipline them. You just love them unconditionally during this time. Talk about what they want. We called it You and Me Time instead of MBST. I’m not good about ensuring this happens but I know how much it helps because my son actually asks for the time. When we have quality time together, just him and me, we are noticeably closer and I feel more connected to him. Saving face is just that, letting him back up and try again without having to bare his soul. For example, say he stole the game console out of your room. Rather than hunt him down for a ‘good talking to,’ take the console back at some non-power struggle time and put it in a different place (probably under lock and key, right?!) and leave a non-judgmental note simply stating the facts about how long the game console will be under lock and key. He doesn’t have to explain to your face or admit he was wrong for taking it. He’s saving face.
-From personal experience I’ve found that if we’ve reached a power struggle situation and there is a stand off happening, I can ease the moment by letting an ‘almost smile’ show on my lips or by making it a silly staring contest, it breaks the tension and is easier to move on in a positive direction. This seems like the same idea as saving face to me. He doesn’t want to be wrong or let you have the last word.
-Read articles about Project-Based Learning here on ADDitude. That may help inform your search if you decide to look for another school. It’s more hands-on learning and up-out-of-your-seat work.
-And finally, there is a new stimulant medication made specifically for children, called Cotempla. It’s very new apparently and side effects are reportedly fewer. It’s ‘exciting because of the micro particle technology it uses as it’s delivery system.’ I can’t tell you any more from that perspective, but the keywords are there if you want to google it for more info. My son switched from Ritalin to Cotempla. He doesn’t like the taste and isn’t always agreeable to taking it, but it’s been a good change for him.
In the spirit of full disclosure and to reiterate my own need for help in this journey, we struggle with two specific things profoundly. First is video games and the second is him punching me, usually related to the video games in some way. Being more consistent when enforcing the video game rules is probably my error there. Being punched (and sometimes worse) is what I’m struggling with now. He is nearly as tall as me and his punches seem to get harder by the day. The urgency to me is that my son seems to be learning that it’s okay to punch a woman (thinking of potential future partners here) and perhaps making my heart heavier is that my 3-year-old daughter may also be learning that it’s okay if a boy (as in boyfriend or husband eventually) punches her. I, of course, say it’s not okay to hit, but actions speak so much louder than words. I’m not at all sure what to do about this situation and my husband has not been much help. He doesn’t seem to take it seriously.
Thanks for letting me share my journey as well. I hope something of my middle-of-the-night ramblings is helpful to you. Also wanted to take a moment to thank others for sharing specific suggestions. I’m looking forward to researching/trying some of them.
Hang in there. What else is there to do, right? We need a retreat for ADHD mamas! And free tickets to it given away on Ellen. 🙂
Much love and kindness your way!